The Genetic Information Nondiscrimination Act of 2008 (“GINA”) protects individuals from genetic discrimination in matter of employment and health insurance. As genetic science began to advance rapidly in the 1990s, many began to worry that participating in genetic research or undergoing genetic testing would affect their employment and health insurance. In 2008, Congress passed GINA to address these concerns.
GINA protects genetic information including individual and family genetic health history, genetic test results, genetic counseling and other genetic services, and participation in genetic research. Under GINA, employers and health insurers cannot request genetic testing or access an individual’s genetic information without the individual’s consent. Only the individual can decide how and how much of their genetic information is shared with third parties.
Furthermore, employers or health insurers with access to an individual’s genetic information cannot discriminate on the basis of such information. GINA prevents employers from making job related decisions such as, hiring, firing, promotion, and pay, based on an individual’s genetic information. GINA also prevents health insurance companies from using an individual’s genetic information to decide health insurance coverage, cost, or benefits for that individual. Notably, however, GINA does not apply to life insurance coverage or long-term care insurance. To fill these gaps, some states have enacted more stringent legislation protecting genetic information. GINA does not override these laws; it merely lays down the minimum floor for such protection.
The U.S. military is an important exception to GINA. The military can use genetic information to make employment decisions. Additionally, GINA does not apply to employers with less than 15 employees.
The Internal Revenue Service, Department of Labor, and Department of Health and Human Services implement GINA’s provisions governing health insurance (Title I) and the Equal Employment Opportunity Commission implements GINA’s provisions governing employment (Title II).
GINA had important implications for individuals taking part in genetic studies. GINA required genetic researchers to use consent forms and explain confidentiality of genetic information to participants in their studies.
Since GINA was enacted, courts have wrestled with the scope of “genetic information,” as to what information GINA covers and does not cover. In Lowe v. Atlas Logistics Grp. Retail Servs. (Atlanta), LLC, the United States District Court for the Northern District of Georgia rejected the defendants claim that GINA only protected medical genetic testing and not forensic genetic testing. The jury verdict awarded the plaintiff employee $2.2 million in damages.
[Last updated in January of 2023 by the Wex Definitions Team]